Across the UK, children and young adults with life-shortening conditions, and their families, not only face enormous physical difficulties but emotional and social difficulties, too, and the role of hospices and palliative carers is to help them.

At Helen & Douglas House – the world's first children's hospice – much of what the team deals with on a daily basis revolves around fostering hope whilst supporting people who are dealing with loss – from the loss of good health and independence, mobility, the ability to talk and eat, to eventually the loss of life and the impact of this on the individual and their family. Contrary to popular perception, hospice work is not just about suffering and misery, but making the most of the time that a person has to ensure that their end of life experience is as pain-free as possible.

Bravery in the face of death

Death is one of our least favourite of topics to discuss, despite its constant presence in everyone's lives. Although inevitable, death and dying don't need to be scary or painful. Symptoms can be managed, and information and conversations can, and do provide comfort.

I believe that we can learn a lot from children, whose pragmatism around death can be disarmingly surprising and distinctly refreshing. They function without the years of cumulated fears and existential realisations with which many adults approach death. Indeed, children often speak very openly about it. They do cry and get cross, but they still laugh. They're not afraid to ask questions like: 'When did your brother die?' whilst playing normally. I think that this attitude is incredibly thought-provoking for us as adults and perhaps should be used to encourage us to challenge our preconceived perspectives.

Family support

Death can be viewed as an alien concept, disconnected from the immediate present. For many families, seeing a person they love fading is incredibly difficult. I believe that the solution to this is conversation. Discussing what is going to happen amongst those that will be affected can be done at any point, not only as death looms. Just as we should fix the roof while the sun shines, we should talk about death when we are well. Knowing what someone wanted means they can be empowered both in life and in death, and removes an additional stress from the grieving process for relatives.

I have known people who view hospices as scary before they've been there, but at a later stage in their journey see them as a safe and protective space. Things change and that's fine. It's not knowing what people want or not being able to articulate it that's the problem.

Tackling physical pain

In terms of tackling pain through both life and death, I find that pain is often made worse by a person's psychological state, so holistic approaches are essential. Enabling people to live life to the fullest is a lot of what we do, and a life to the fullest is a life with as little pain as possible, regardless of how long that life will be. For patients, the best experiences of palliative care are those that mark out their life quality. This means measuring activities that are memorable, not for their pain or suffering, but rather for the successful quality of life experienced.

In my experience, wider society and those outside of the sector assume that pain is the most frightening thing in the process of palliative care, but it could be a number of things. Often we find breathlessness and disorientation considerably more challenging and less fixable than something for which many people take daily medication. Proving that living and dying well is not only limited to pain-management, but an issue which requires much more to effectively tackle.

While we can't promise painless days, I believe that everyone should be able to access good palliative care that tries to alleviate this, and, if they need it, specialist care too. Practical support, from cinema trips to organising a disabled badge or mowing the lawn, is also vital. It can help reduce stress and therefore pain, returning patients to a more comfortable psychological and physical state.

Clare has been part of the team at Helen & Douglas House since July 2005, previously as Director of Clinical Services and Deputy Chief Executive, and was made Chief Executive of the charity in August 2015. For more information about Helen & Douglas House, click here.

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